Maryland: ICF/ID admission determination requires due process

(from the VOR web site)

The Maryland Court of Special Appeals, in 2006, found in favor of Appellant, Mary Reese, who, on behalf of Virginia Massa, appealed the denial of Virginia’s admission to Holly Center, a state-operated Medicaid Intermediate Care Facility for Persons with Intellectual Disabilities (ICF/ID).

The Court agreed that Virginia was denied procedural due process because the Statute only provided for a hearing if the Secretary approved admission; it did not require a hearing when an application for ICF/MR admission was denied. Because ICF/MR admission is a state benefit, applicants who may be eligible have an interest that cannot be taken away without due process. To the extent that the Statute does not provide for a hearing when admissions are denied, the statute is unconstitutional.  

 
The case is Mary L. Reese, Guardian v. Department of Health and Mental Hygiene (Md. Ct. Spec. App. 2006).

Sometimes the right place is an institution

This is an unusual story coming out of Maryland. Mary Reese, the stepmother and guardian of a woman with severe intellectual disabilities fought for years to obtain the care her stepdaughter needed in an institutional setting, an Intermediate Care Facility for persons with Intellectual disabilities (ICF/ID). By challenging the state's denial of admission to the facility, Mary also set a precedent in the Maryland Court of Special Appeals that ruled that the state's denial of a hearing after denying admission to the facility is unconstitutional.

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Holly Honeymoon: Victory is Christmas present for one family and hope for others
by VOR, January 31, 2013

After an eight year journey, Virginia (“Ginger”) Massa now calls Holly Center home. Families in similar situations across the country will appreciate what a monumental challenge it was for Ginger and her family to secure placement at Holly Center. As a Medicaid-licensed intermediate care facility for persons with intellectual disabilities (ICF/ID), becoming a permanent resident meant bucking a state and national trend.

Ginger’s good fortune is not lost on Mary Reese, Ginger’s stepmother and a VOR Board Member. As a national advocate, Reese knows all too well that Ginger’s struggle for the past eight years is one shared by thousands of individuals across the country.  She recognizes that her job as an advocate is not done.

“Our elation at Ginger’s placement at Holly Center is diminished by the knowledge that thousands of others are ‘stuck’ in community residential programs without consistent care and comprehensive services that are so necessary for their well-being.  I wish we could have done more to change this system which is so heartless and cruel in the name of individual rights and the subjective interpretation of least restrictive environment.”
 
Looking back and ahead

Ginger's long journey, while certainly peppered with significant hurdles along the way, is not without success that will benefit others.

One early legal victory was the 2006 decision by the Maryland Court of Special Appeals ruling which stated that Massa was denied due process when Maryland's Secretary of the Department of Health and Mental Hygiene refused to even hear her request for an ICF/ID placement. The controlling statute was found unconstitutional because it only provided a hearing when ICF/ID admission was approved. No such hearing right was offered when ICF/ID admission was denied. Ginger's fight changed state law which now requires appeal hearings in each case.

"Families still face an uphill battle, but at least now there must be a fair hearing," remarked Reese. "In our case, it reset the clock and gave us hope; before it was nothing more than the Director's whim, letterhead and signature."

Reese, who has long been involved in VOR and now serves on its Board of Directors, credits VOR for recognizing that a victory for Ginger would benefit Ginger’s peers throughout Maryland.

"VOR convinced the law firm Sidley Austin, LLP, that Ginger's cause was a case worth taking," said Reese. Thanks to VOR, we had access to outstanding legal representation and advocacy to carry this cause forward." Sidley Austin attorneys provided pro bono representation to Ginger and Mary for more than 6 years.

Ginger: At home at Holly

"I've been telling everyone it felt like Ginger and I were in the film 'The Wizard of Oz,'" says Reese. "Remember how the film begins in black and white and then at the yellow brick road everything turns to Technicolor? That's the best way I know to describe what a dramatic change Ginger has experienced moving from her inadequate and, at times, unsafe, community placement to Holly Center, a licensed ICF/ID."

“Her life and care has taken such a dramatic change, it is hard to believe we could have ever grown to tolerate for so long the poor care provided in her community home," she adds.

"We will not abandon those who are not as fortunate," says Reese.

"Our greatest hope is that Ginger's long journey paves the way for others in Maryland and even across the country."

Michigan: Center for Autism provides residential and outpatient treatment for children

An Associated Press article appeared in a number of newspapers about Michigan parents who are trying to get funding and donations so that their 13-year old daughter can remain in treatment at the Great Lakes Center for Autism Training and Research in Kalamazoo, Michigan. The article, entitled "Elberta parents fight for autistic daughter" by James Cook, is about the struggles of Michigan parents as they attempt to deal with the aggressive behavior of their severely autistic daughter. They have received partial funding for treatment for one month from insurance and their local Community Mental Health agency and are trying to extend treatment for as much as eight months. The cost for treatment and placement at the residential center is $765 per day.
 
The daughter Issy is prone to violent outbursts and has endangered both herself and the other members of her family. The child's father Matt Stapleton says of his family, "It's a parent's worst nightmare to love your kids so much, but have them feel at risk when they're in the house…I feel like I let my family down when I can't protect them all; I can't protect (daughter) Ainsley or Kelli, and sometimes I can't protect Issy from herself. It's a horrible feeling, and we're hoping that this place can not only give her some tools, but also give us some tools to help with that."

The Great Lakes Center for Autism Treatment and Research in Kalamazoo, Michigan, opened last August and was featured in an article at MLive.com,  "Great Lakes Center for Autism opens in Kalamazoo; Calley says Southwest Michigan can take lead in treatment" 8/13/12 by Ursula Zerilli.  According to the article, more than 100 people joined Lt. Governor Brian Calley, who has a daughter with autism, at the opening of the center that is associated with the Western Michigan University's Department of Psychology. WMU is known for its program in Applied Behavior Analysis (ABA), a treatment for children with autism. 

Also, according to the article, "the center's opening comes on the heels of Calley's signing of legislation requiring insurers to provide coverage of autism diagnosis and treatment, while directing the state Licensing and Regulatory Affairs Department to create an autism coverage incentive program through which insurance carriers and third-party administrators can seek reimbursement for paid claims. The state also established its first State of Michigan’s Autism Council, on which Fuqua [from the WMU Psychology Department] will serve."

The Great Lakes Center hopes to serve 150 children as both a residential and outpatient treatment center for children with autism and other behavioral disorders.

With any treatment program or residential placement, parents should investigate the pros and cons of the treatment and be fully informed of what they are committing themselves to. Great Lakes Center Web site is a good place to start. The Center is licensed by the state as a Child Welfare Facility. A State licensing Web site  has information on licensing and licensing investigations as well as identifying other facilities in the state by county.

Connecticut: Abuse and neglect in residential facilities

Disability Scoop, in an article by Michelle Diamont, "Senator Seeks Federal Probe of Group Homes", 3/6/13, reports that the U.S. Senator from Connecticut Chris Murphy has asked for “an immediate investigation into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.”

The article says, "Specifically, Murphy urged Inspector General Daniel Levinson [in the U.S. Department of Health and Human Services] to focus on the 'prevalence of preventable deaths at privately run group homes across this nation,' citing increased privatization of residential services for those with disabilities in recent years."

It goes on to say, "The senator’s request comes in response to a recent series of articles in the Hartford Courant detailing cases of abuse and neglect of those with developmental disabilities at various residential facilities in Connecticut. The newspaper found that there were 76 deaths of those with developmental disabilities between 2004 and 2010 where officials cited abuse, neglect or medical errors…Murphy indicated that similar reports have emerged in recent years from Virginia, New York, Massachusetts, Louisiana and Texas."

This article from the Hartford Courant, "Abuse, Neglect Cited As Factors In Deaths Of Dozens of Developmentally Disabled In State Care" By Josh Kovner, Matthew Kaufmann and Dave Altimari details the Hartford Connecticut Courant's findings in its investigation of abuse and neglect in the state's facilities for people with developmental disabilities, including public and private group homes, nursing homes, and institutions.

According to the article, "The Courant's review of state records associated with the more than 100 deaths revealed systemic flaws in the care of the developmentally disabled, ranging from breakdowns in nursing care to gaps in the training of staff to lapses in agency oversight….

"Developmentally disabled people were scalded to death in bathtubs; were fatally injured in falls while on medication that affected their balance; choked to death on solid food while on ground-food diets; died of illnesses despite showing symptoms for days or even months; and succumbed while being physically restrained...

"In 2001, a Courant investigation of deaths of intellectually disabled people in state care identified 36 cases from 1990 to 2000 in which abuse or neglect played a role in the death. The Courant found more than twice as many cases from 2004 to 2011, despite added oversight by the agency now known as the Department of Developmental Services. Now, budget pressures are further straining a system that many believe has reached its breaking point."

The article includes links to other articles in the series investigating the care of developmentally disabled people in Connecticut.

The VOR Weekly News Update from March 8, 2013 also covers the Disability Scoop story and provides this link to a blog from the Southbury Training School. The blog post urges the state of Connecticut to reconsider its decades-long decision to close admissions to the training school and to see STS as part of the solution to the current crisis in care in Connecticut:

"STS is a critically important state asset.  On its campus are group-home-style residences as well as medical and dental facilities that serve both its own residential population and many people in the community.  Those facilities are staffed by on-site doctors and nurses and by specialists who regularly visit the residents, most of whom have severe and profound levels of intellectual disability and complex medical conditions…

"In response to a court settlement in 2010, the state has stepped up its efforts to encourage guardians to move residents out of STS and into the community-based group-home system.  However, there is currently a waiting list for residential placements in that system that is conservatively estimated at more than 1,000.  There are not enough group homes for people who need them. 

"Anyone who agrees to leave STS will be moved quickly to any open or newly built community-based residence.   But that means that they are moved ahead of many other people developmental disabilities, who may have been waiting for years for a residential placement.

"The result is that ever larger numbers of people are being kept at home with inadequate care or are being placed in nursing homes, which state officials acknowledge do not have the staffing expertise to care for them. "

Supporting Families Part 1: Families of people with DD need help, but will they ever get the help they need?

I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities". 

The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin.  The conference was sponsored by the federal Administration on Developmental Disabilities (ADD)  [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they  attended the conference as representatives of their programs or organizations.

Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.

The Supporting Families report establishes that families do, indeed, need help:

(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".

(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability. 

• Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
• Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
• Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
• Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD  households where the primary caregivers are themselves aging."

Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.

As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.

Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD.  In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.

There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them.  It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.

It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill  gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.

That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?

One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."

The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.

stay tuned for more...